Adapting to CGM

96 Match
OmniPod and DexCom matched up at 96

It’s been almost two months since Caleb had his first DexCom insertion.  Thankfully, the learning curve of CGM is not nearly as great as that of pumping.  Plus, if something goes wrong with the transmitter or sensor or even receiver, there is not as much panic as when something goes wrong with an insulin pump (like ripping it off the first night because you completely forgot about it).  You’re not cutting off life support after all.

So the transition to CGM is much more subtle than the transition to pumping.  That was a relief.

We have had a couple of bumps.  For nights on end, it would just not work.  It literally seemed to go to sleep when Caleb went to sleep and wake up when Caleb woke up.  With some help from fellow DexCom users, that was resolved.  The receiver works great when it’s in the bed with Caleb.  Not so great on the nightstand or windowsill.  We had a receiver go kaput.  We’ve had a couple of off sensors – one just complete fail. DexCom replaced them.

But otherwise.  No real issues.  It’s kind of “plug and go”.  Our training consisted of watching the nurse do Caleb’s first insertion.  Oh, and I read the manual.

CGM has had an immediate impact in several ways.

I was instantly more relaxed.  We had pizza that first night and I wasn’t on edge wondering if I got the initial bolus right or if the extended bolus would cause him to go low.  I could watch the changes in Caleb’s BG as they occurred.  But on the flip side, I get stressed as I watch the BG rise.  And when it continues to rise despite corrections, it’s downright maddening.

Because the blindfold is off, I could see for certain what I always suspected.  Caleb’s blood sugar was often rising significantly within the first hour after he ate.  It came back down at the two hour mark and I saw the happy in-range BG we typically see with fingersticks, but now I knew for sure what was happening in between.  Frankly, it was depressing.  His graphs looked like the lie detector charts of a big fat liar.  I mean, serious pants on fire.  It wasn’t surprising, but there had been comfort in dealing with the ten or twelve points in time and just ignoring the rest.

This new knowledge is power.  I was able to make basal changes or adjust the time of a prebolus making immediate impacts.  Caleb’s chart looked more truthful right away.

CGM provides another form of relief – during the times when I, his diabetes manager, am separated from him.  Caleb has a great support system at school, but now there is an added safety net.  Should he not feel a low coming on, there is a plan B.  Another voice buzzing from his hip that might notice a low before he does.  This applies to other times too – like after-school activities or the rigors of Walking Club before school on Wednesdays.  We have a little more freedom; a little less stress.

In general, there are times where we simply have information that we would not otherwise have; times when we do not have to stop, open up his PDM case and go through the whole exercise of a fingerstick.  A quick peek and we have a sense of what to do.  We’ve either eliminated the wonder or saved the inconvenience of an extra BG check.

And here is my favorite thing about CGM: I love, love, love the directional arrows.

Directional arrows make all the difference in the world to me.  If a regular blood sugar meter could tell the direction of blood sugar levels, even with just 10 points in time each day, that would be a huge improvement.  If Caleb is at school and the nurse calls me with an unusual situation, she will tell me his BG from the finger stick and the direction of the CGM.  This can change the course of action from that if only the BG was available.  If I had known the direction of Caleb’s BG that night after eating pasta at the restaurant, I KNOW we would have avoided that low.  I would have seen “121” and double arrows down.  That is so much more meaningful than just “121”.

The last enhancement worthy of mention is nighttime.  It’s  a little less grueling.  Looking at the CGM is significantly easier in the middle of the night than inserting a test strip into the PDM, poking a hole in Caleb’s toe and (often pop-eyed) trying to align that little half circle with the drop of blood.  Some nights I am so out of it, with little depth perception, that I am dabbing a blood-free part of his toe waiting for it to register.  I still have to do all that when there are out of range BGs, but the “just make sure” checks are much more seamless.

So here we are.  We were reluctant to start.  Underwhelmed when we began.  We are starting to adapt.

She just wanted some milk.

Lila
Lila

Lila is four.  Caleb was just shy of his fourth birthday when he was diagnosed.  In both appearance and personality, Lila tends to be more like Caleb than older brother Colin.  For some reason that has always made me think that if either Lila or Colin were to develop D, it would more likely be Lila.  Not logical, but it’s what I have always thought.

Driving home from preschool the other day, out of the blue Lila says, “Mom, can I have some milk?”  Lila has always enjoyed milk, but with her meals.  She has never been one to drink much beyond that, and if she does, it’s water.  For about a month before the light bulb went on that something might be up with Caleb, he requested milk.  It should have been a reg flag, but I was clueless. “Icy, icy cold milk,” he wanted.  Visions of him asking for it are etched in my memory because at the time, I just thought he was growing.  But it was a telltale sign of diabetes that I completely missed.

So when Lila repeated Caleb’s request, a pit formed in my stomach.  I started to think about the other symptoms.  Frequent urination – nope, not at all.  Lethargy – no way.  Weight loss – I really don’t think so.

But I couldn’t get beyond the taboo milk request.

We arrived home, unpacked her backpack as usual, and sat down at the kitchen table.  We’ve done it before, so it’s not a big deal – I ask Lila if I can check her sugar. “Sure Mom.”  I prick her finger, the test strip soaks up the blood and the five seconds of wait, which seem like an eternity, begin.  I’m telling myself this is not a big deal. She’s just thirsty.  She has no other signs.

Then the number pops up. 257. IMG_1783

Well that was not what I was expecting.  “Lila, let’s wash your hands.” “Okay mom.”

Another prick, another blood soak – error.  Another prick, another blood soak – error.  I’m trying not to panic.  But I am now thinking of the logistics of calling my husband to come home.  Do we go straight to the hospital or call Caleb’s endo?  Who’s going to get the boys from the bus stop?  Can we get her pumping right now?  Will insurance drop us with two diabetics?  And most of all, the flood of memories of Caleb’s diagnosis comes back to me in a wave.  Lila is starting to get anxious with the pokes and now they hurt.  How am I going to to get her through what lies ahead – shots, insertions, more finger sticks.  I’m looking at her in the eyes, trying to stay calm, but my heart is breaking.

Another poke, another soak. 168.  Not what I was hoping for.

I finally give her the milk she requested and the cookies from lunch she didn’t finish at school.  We go about our normal routine although I have little ability to process thought.  We are communicating, but I have no clue what I am saying because I’m still thinking about the hours and days and weeks and years ahead.  I give it about fifteen minutes, pull out a completely different meter, and we do another poke and another soak.

104.

That’s more like it.

Just like that, life resumes to normal.  My shoulders drop a little from the relief.  I give Lila a big hug and she is oblivious to the future I envisioned for her over the last twenty minutes.

Just to be sure, I checked her sugar later that day, 84 and the following morning, 82.

All she wanted was a glass of milk.

We walked.

Caleb at the JDRF walk - 10/18/09
Caleb at the JDRF walk - 10/18/09

We walked to raise diabetes awareness and funds for a cure.  We were overwhelmed by the generous response from our friends and family.  We set out with a total goal of $1,000, hoping for perhaps $500 of contributions that we would match.  You met that challenge and more than doubled it.  Thank you so much for all your support!

I’ve seen so many pictures of walk teams with blue skies, colorful t-shirts and well, sun and warmth.  Our pictures are a little different.  But that’s okay.  We walked in honor of Caleb and all PWD because we want better for them.

I’m so proud of my family.  It was pouring on us, forty degrees, strong winds whipping our faces and our path was riddled with puddles.  Lila was “bubble girl”, essentially wrapped in plastic.  Not a single complaint from anyone.  Caleb, Colin and David were the last walkers there – still trudging through the mud and puddles while others were packing their vehicles or were long gone.

At the walkThen we returned to our vehicle, took off our soaking layers and headed home, stopping for a well deserved treat of Dunkin’ Donuts on the way (I’m happy to report BG has been hovering between 80 and 100, with a nice flat arrow).

I knew we would create a memory today.  I had pictured it differently, but it’s a great memory nonetheless!

Anyone interested in making a donation to the JDRF can do so here. Or just click to see and hear the goal thermometer explode!!

IMG_3625_2

Taking the CGM Plunge

DexcomI admit it – I resisted.  Mostly because I could not bear to think of having to pierce Caleb’s skin for yet another reason.  Finger sticks and pump insertions seemed like quite enough. Adding a CGM – another poke, another pain, another apparatus strapped to him – seemed too much to ask.

But it remained in the back of my mind always.  Every time we waited for the blood drop to register – that little game of roulette we play ten to twelve times a day – what number would pop up? It’s part gamble.

Caleb and I talked about it.  He bravely agreed to try it.  I nonchalantly started the insurance process expecting it to be a long series of rejections and appeals. I was still reluctant and took every step with much more time than was necessary.

Then we went out to eat for grandma’s birthday.  Caleb chose his favorite – pasta.  I will not allow diabetes to make more choices for him than necessary.  So even though I hadn’t dosed him for regular pasta in a long, long time, I gave it a try.  I weighed his portion and bolused him reducing it by an amount I remembered working back when we weren’t eating new pastas.

We were off to a good start.  Blood sugars were behaving nicely.  But then shortly after he went to bed he yelled saying he felt low.  He was 22 and he got there within minutes. We’ve never seen 22 before.  More alarming was his reaction: “Mom, why does everything look so small?”  “Mom, I feel like I’m gonna die.”

He was back in range quickly.  But I don’t want him to ever experience that again.  I couldn’t help but think CGM would help.  So I stepped up the insurance process and within a week I got the call that he was approved.

Fast forward to the first insertion:

So how is it working?

As expected.

I made the mistake of expecting miracles when Caleb started pumping.  I didn’t make that mistake with CGM.

It is helpful.  It is informative.  I appreciate having to play roulette less.  I felt a sense of relief immediately being able to watch Caleb’s blood sugar change rather than get slapped in the face every two hours or so.

But, like pumping, it’s far from perfect.  Glucose readings must be verified before acting, so we have yet to reduce finger sticks.  In fact, we’ve done more than ever to verify all the ups and downs within those ten to twelve times a day we traditionally check.  It’s not always accurate.  Sometimes it’s WAY off.  But much of the time it is meaningful.  And it’s true what everyone says: the trends are the real value, not necessarily the numbers.  But, when it does work and work well, it’s actually pretty fabulous.

I really want the theory behind CGM to be the true reality of CGM.  I want it to tell me what his sugar levels are 24 hours a day.  It doesn’t.  It doesn’t “catch” his lows and highs. It alerts us to the possibility or even likelihood of lows and highs – but sometimes not even that accurately because there is a lag between its readings and his actual blood sugar. Compound that issue with its readings being off maybe ten to twenty points and it’s easy to miss lows.  So it can catch his highs and lows, but it doesn’t do that as a rule.

So far CGM has softened the extremes in Caleb’s blood sugar readings.  It is a step forward in Caleb’s care regimen. I am glad to have it.  It is, however, a much smaller step than I would have liked.

In all fairness though, we are still new to it, and I am optimistic that our learning curve will improve and the small step will become at least a little bit bigger.

Nevertheless, it is too much to ask.